Finding peace amongst my sorrow is truly honoring the life we have shared together Finding peace and acceptance is respectful to a life still to be lived.
To the heart’s of those left behind.
Tag: Adsl Deficiency
A very rare metabolic disease of the purine system.
Insights into the rare disease AdsL Deficiency
On behalf of all our families I'd like to say a huge THANK YOU to to all the research Doctors and scientists across the world that have been passionately involved in researching this disease over the years. I have found solace in our collaboration. Read More....
Parental Insights into Adsl deficiency
An Invitation to all families to complete the following AdsL Deficiency parent survey. Read more...
Our One in a Million Children.
Research team's provided insights into the rare disease ADSL deficiency. It can be somewhat comforting to know that even on our worst days of living on the front line of this disease with our children, we are not alone in our search for answers. I have found solace in our collaboration, knowing that we are not alone in our dream of one day we will find a cure, or a treatment that will change the lives of many children; and if we ask the right questions will we find the answers that could possibly save many lives well into the future. Read more...
The Adventures of Hamish and Shadow – Episode 1
From the moment these two connected we knew we were about to witness something very special. Read more...
“What happened to that boy, mummy?”
As much as I wished my children were more like yours, I wish more, that your children learn empathy, to connect to children like mine.
Love's state of mind 
You must be logged in to post a comment.